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Andy, if you do a search you'll find a long thread on phenylephrine

I think it's been said before - the people who have completely healed are unlikely to be on this forum. They have likely moved on with their lives. Over my past few months on this forum, I have seen the occasional person check in to say they're much better... I also wonder about some of the people who were doing the worst and then stopped posting though...

Seeing as orthostatic headache is such a common symptom, and probably is what is most limiting many of us from more normal activity (and increased activity may in turn, as exercise, help to alleviate all the rest of the symptoms), it would seem that solving it would be one of the most important parts of symptomatic treatment. Yet, none of the typical POTS medications treat orthostatic headache. Or do they? What have been some of the most successful treatments for orthostatic headache in POTS patients? I for one would not want to use a pain killer simply for this - since the orthostatic headache is one of the best indicators that we're overdoing it - we don't want to NOT know when we have lack of blood/oxygen/too little pressure/too much pressure in our brain!

I've been thinking about it a lot in those terms recently too. Four days from now will be the anniversary of when I left for California and a few months later my life took a dramatic nose dive. I can't imagine going through the last few years of my 20s sick like this, when just a year ago I was in my prime. I am sometimes (maybe even often) convinced that I will eventually, with the help of the right doctor, stumble on my underlying cause, get it corrected, and move on with my life. Yet most tests have come back negative, except autonomic dysfunction tests. You're absolutely right - doctors really don't know what they're doing with this. The ultimate symptom - one's heart rate going up when standing - can be caused by such a wide range of conditions that I think of "POTS" as just a symptom. Even the mainstream POTS researchers admit that the disease itself with no underlying condition is at a minimum 4 different diseases (Hyper, MCAS, NET transporter, etc...). Yet I know I do have something. I feel the pains, and the heart rate certainly can't be in my head. I wear a little pulse oxometer every 2 hours when I walk and I see the heart rate climb and go back down no matter what I'm thinking of or how I'm feeling when I stand up. As far as the misdiagnoses of anxiety go that some get - as a couple of my doctors put it - no matter how anxious you are, you can't make your heart rate instantly double upon standing up... So... we must accept we have this... well at least the symptoms. We don't need to accept the generalized disease, since... what disease? Which one of the many that "POTS" can mean? In some ways perhaps acceptance would be easier. The doctors tell us our condition is non-life threatening and that we have a >50% chance of recovery in 2-5 years. PS My thoughts are a bit confused by the fact that I do have congenital heart conditions and a blocked right jugular vein. Yet the doctors say these are unrelated...

I've been reading this article: http://hyper.ahajournals.org/content/45/3/385.full Out of curiosity: 1. How long until you noticed H1/H2 blockers making a difference? 2. Do you flush in one specific area always? 3. I know beta blockers are counter-indicated for MCAS patients. What reaction do MCAD patients get from them? 4. How high does your blood pressure rise upon standing? 5. Did your original symptoms start suddenly or did you have them most of your life? What was onset like?

When I get up and walk. Every time my right hand/arm turns red while my left hand/arm stays white. Does anyone else experience this? Is it possible that my small fiber neuropathy is one sided, or is this related to something else? This is the same arm (right) that I have had some small patches of skin changes since the POTS started (biopsy came back as spongiosis of unknown origin - ie eczema).

Also my POTS doctor said the walking lowering heart rate thing is typical and he told me to never stand still, so I walk 10-15 minutes every 2 hours per his orders. Makes doing some daily tasks difficult but I have learned to cope this far with most things. I certainly don't plan to continue doing this for the rest of my life though! I plan to become normal again....

Hey andybonse and agreeky - I also have very similar numbers and symptoms. I do think the beta blocker has helped more than midodrine in my case although both lowered heart rate somewhat.

I want to see how alone I am on this, because at this point it's my most profound and challenging symptom.

Their CCSVI like treatment for POTS: http://www.synergyhealthconcepts.com/tvam-transvascular-autonomic-modulation/#.UbkkuBYc2aQ It's been talked about here a few times - does anyone have some real world experience? Considering that I actually do have the thrombosis of the right jugular vein, I think this maybe my ultimate step.

Hi bequich, Reading your story is so saddening, but I hope you still have some hope - since you can recover, at least I believe you can, because I believe I can, even though I have not yet! I don't have any cures, but I just wanted to ask if the exercise you have tried has been recumbent exercise? When I say recumbent, I mean completely seated, not just sort of seated as some bikes are...

Pretty scary stuff about reductions in grey matter and white matter... There is also again the allusion to de-conditioning.

I have gotten some differing opinions on this. I was drinking 5 L a day, and a cardiologist said that was fine. Now a Mayo trained neurologist has told me to cut back to 3 L because I maybe diluting some of my electrolytes. Both are POTS experts. I'm cutting back starting yesterday, and hoping it will help reduce my orthostatic headaches. I'm going to try adding in some non-water drinks too. But I have trouble with the citric acid in gatorade and with anything even slightly acidic due to gastro problems. I'm adding e-lyte into water bottles occasionally and doing Smart Water as well occasionally.

PS so sorry about your medical system experience. It can be so frustrating trying to get the help we need!

I wish when I was last having severe gastro symptoms and losing weight I had sooner put myself on a nutritional supplement. I take elecare and it really helped my weight stabilize. There are many similar supplements designed for children and adults - they maybe expensive but they may also keep the weight situation from getting worse.

I was bed bound two months ago for two weeks. I now am up to recumbant biking 30 minutes 5 days a week, doing light weight strength traininig the other two days, and walking 60-90 minutes spread out over 6-7 walks spaced every 2 hours every day. I wear a heart rate monitor during everything. Have I seen improvement? Minor, which is better than nothing but it's hard to tell how much is the exercise and how much is medication. I feel keeping at it and continuing to increase it as I can tolerate is my best option even if it is extremely uncomfortable and leaves me in a state of constant headache and pain.

Luckily my C3 was normal. I just got my official autonomic testing report and it stated mild reduced sudomotor response maybe indicative of small fiber neuropathy. Now on to the skin testing in a few weeks to confirm that.

Actually got my test results in the mail just now. It turns out it wasn't all normal. My CH50 was elevated (says H >60, doesn't give a specific number). I don't know much about the immune system. Reading about elevated levels yourself online is scary - says it indicates a serious health condition like cancer. Hmmm, not sure why my PCP said on the phone everything is normal. But it seems like an elevated CH50 on its own doesn't really say much except that some underlying condition maybe causing chronic inflammation.

More test results: All autoimmune panels (to exclude Scleroderma, Sjogren's, Lupus) - Normal Mayo Panel - Normal TTT - Stopped after 30 seconds because heart rate went to 140s from 70 Sweat Test - A little abnormal Valsalva - Normal

Curious about this too... Let me know what you find.

If I were you I'd be excited - this might be the link you need to get better!

Yes I have presented this short note by doctor Blitshteyn to my doctors that highlights that the seemingly psychological symptoms are actually physical: http://jnnp.bmj.com/content/80/3/339/reply#jnnp_el_4620 I think it is very helpful to highlight a few lines of it and present it to your primary care doctor or non-POTS specialist cardiologist.

Ask about switching to the beta blocker atenolol - it does not cross the blood brain barrier and so has fewer psychological effects. Of course your mileage may vary.

Oh and Katy my pots doctor said the same thing about the walking eart rates - that the big slowing I see with walking is totally normal. In fact e wants me to walk more. I'm up to 8-15 minutes 4x a day but he wants me walking every 1-2 hours - but never standing still. That's quite different from the only recumbant exercise that Levine recommends.

Getting a lot more testing done and saw a specialist in person in NYC who I am very hopeful about and confirmed the diagnosis with in person testing. After 5 minutes of standing my blood pressure collapsed - my diastolic went way up and systolic dropped to create a dramatic narrow pulse pressure accompanied by a 140 HR. It's so important to look at your own results. I studied the halter monitor from October and I already had POTS! The technician and doctor just didn't pick up on it. There was pronounced tachycardia every waking hour and I wasnt doing any exercise! That was before my second head hit and a couple weeks before i started feeling dizzy and headachy when standing but a couple weeks after the gastrointestinal symptoms started and a lot of the other possible triggers - so I'm still not sure it's not post-viral/immune but now I am more worried that it is a long standing heart condition related phenomenon that just suddenly got much worse... But the bottom line is I really don't know now if it was sudden onset or pre-existing and just got much much worse. I never had symptoms before October - except maybe a little shortness of breath which I figured was just being out of shape, but I still hiked, played tennis, and did other very intense physical activities all the time. But then why the sudden gastro, skin, head, and coldness changes... Well the autonomic neuropathy blood test and skin test will both be back in the next month and we will see. If they don't see an obvious cause for the sudden changes in my heart on echos then I have to continue to assume that this is separate from my congenital heart conditions that were repaired. But the new POTS specialist says my diastolic dysfunction is just making the situation worse - not probably causing it... Which is good since I rather have a treatable immune issue than a heart condition honestly.